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ALS News & ResearchFor postings of news or research links and articles related to ALS

ALS patient startshis book tour at Northport High

ALS patient startshis book tour at Northport High
BY JAMIE TALAN | Special to Newsday
November 7, 2007

Augie Nieto, a California businessman who made a fortune on fitness machines, is in the right place to tell his story about how a turn of events took him off the treadmill and into a wheelchair.

Nieto was diagnosed with amyotrophic lateral sclerosis in 2005, and yesterday he was at Northport High School talking to students who share the same commitment to cure ALS. Two district teachers and a 1980 graduate of the high school have ALS, also known as Lou Gehrig's disease. In three years, the students have raised $470,000 for ALS - and about a dozen students during that time have conducted research in some of the most prestigious ALS laboratories in the country.

"As a teacher, I couldn't be any prouder of these students," said Chris Pendergast, a former science teacher diagnosed with ALS in 1993. "Teachers are always looking for authentic ways to educate and there is nothing more authentic than working on research that could potentially save their teacher's life."

ALS destroys motor neurons and gradually leads to loss of speech and paralyzation.

Nieto, who started off his national book tour for "Augie's Quest: From Success to Significance" at the Long Island high school, agreed. "I have never heard of any school raising that kind of money for any disease." He urged the teenagers to find their passion and "follow it to the end of the earth."

It is no small irony that Nieto's passion was fitness. As a teenager, he started a company with a single product - a fitness machine that no one wanted. "Can you imagine betting everything on that ...?" Nieto asked. "You had to buy two because one was always broken." Of course, he and his partners worked out the kinks in the machines and now gyms all over the country are powered by Life Fitness products.

He has now shifted gears to fight this fatal disease. In two years, Augie's Quest has raised $11 million for research. "Your passion will be your compass, your time clock," Nieto said.

He gives away life lessons at breakneck speed and with good humor, including a David Letterman-like list of the top 10 reasons to be happy about having ALS. But there was no mistaking the reality that no one survives ALS. Five years is the average life span of ALS sufferers.

The money Nieto raises goes into a collaborative partnership between the Muscular Dystrophy Association and ALS Therapy Development Institute. Last year, Nieto pledged $18 million as a matching grant to the Cambridge, Mass.-based company that was started by James Heywood after his brother Stephen was diagnosed with ALS. The company has tested the majority of federally-approved drugs against ALS in the laboratory - and came up empty every time. More recently, said Sean Scott, president of ALS/TDI, they found an anti-malarial drug that works in animals with ALS triggered by a genetic mutation identified in people with a familial form of ALS. The drug is now being tested in ALS patients with this mutated gene at Mount Sinai School of Medicine in Manhattan. The mutation has tracked in Scott's family for generations.

Sales from Nieto's book, published by Bloomsbury, will be donated to ALS research.

His final message to the students: "We will find what causes ALS. We will prevent others from having to go through what we are going through."

"It's been an amazing experience," said 17-year-old Sean Flanagan. He spent the summer researching ALS at Johns Hopkins University. Other students have worked at the Jenifer Estess Stem Cell Laboratory in Manhattan and at another ALS lab at Columbia University.

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